GRRRRRRRRR I HATE LE..........
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PVM--I have slight LE in my arm--only I would know unless I put my arms together and show people the difference. It was bad last year at this time when I started radiation and i was able to have 8 weeks, 2x/week. of lymph drainage massage. It helped tremendously with the cording issue i had but was never completely gone. I do 6-8 minutes of self drainage massage in the morning before I get up. I also make sure I stay hydrated, stay away from junk food (it gets worse when I eat poorly), and wear a sleeve when I exercise 5 days/week. Sometimes, like today, I keep the sleeve on all day. It has definitely gotten better below the elbow. But now I feel like it's accumulated more from the elbow to the shoulder. I just bought a mini trampoline and have used it for about 15 min the past couple nights. My point is, a massage now and then isn't going to cure it (but if your insurance pays for it, the PT can show you how to properly do it on your own). It's a continual process of the body ridding the day's toxins through the lymph system. I think looking up some self massage videos on reputable medical websites would be helpful to do daily. I have also used a dry brush which helped as well as a mini fascia blaster after I shower or bathe.
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thanks so much for the advise Pamela, i currently do not have LE & like i said am hoping to do whatever possible not to get it. I know unfortunately we have no clue whom will develop it or not so i am trying to be proactive. I am trying to stay hydrated as much as possible as well as doing my stretching but will put in my self drainage massage daily. Its a few minutes of our lives that can help with future issues.
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I just got the last two of my drainage tubes out today. They were in for three weeks and one was still draining 40-50 mLs about every six hours. All along I was thinking the tube went up into my armpit creating a hotdog shaped lump. Well today I found out that wasn't the case! My PS said to massage it frequently and asked if I wanted to go to PT. I said yes and she wrote me a script. Is this gross disfigurement LE? She acted truly surprised when she saw it? How many more hidden things are there for us to worry about?
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Learn from my error in my ways ladies. I hadn't had any swell in years so I got lax wearing my sleeves and gauntlet. Started exercising and gardening without them. I went into the doctor for my yearly check up yesterday, and noticed my elbows were swollen. Doc looked at it and told me, that looks like lymphedema swell - dang, dang, dang. Back in sleeves this morning
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Does this sound like lymphedema? I'm starting to freak out a bit. My chemo was stopped early about 2 weeks ago as the possibility of neuropathy was there. I was so excited to be done. I only had three left and this week I start the rads. But my right arm where I had the lumpectomy is starting to bother me and my feet keep swelling if I sit or stand too long. I would get these arm pains throughout chemo but it would eventually go away. It's been about 5 days and it's not getting better. Most tenderness and tightness pain from bicep down to top of hand. And the feet swelling started a couple of days after this. Is this normal? I'm just so scared about what is happening. Has anyone else experienced this?
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Karentwriter- my LE makes my arm feel heavy, tingly and tight at times. The majority of my LE is in my chest/trunk area. I have no swelling in my legs or feet. I didn't have chemo just lumpectomy and 5 weeks of radiation.
Gemini- I had a lump of fluid in my arm pit for MONTHS! After 10 months of PT and OT I feel my armpit in ok shape. I felt like I had a golf ball in there! I also have the flexitouch pump and it has made a huge difference!
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Karen: The best thing to do is get to a trained, certified LE physical therapist for an evaluation as soon as possible. The swelling could be LE in your arm and it's not worth waiting. Below is a link with lots of info about LE and how to find a trained therapist that was written with the input from several BCO ladies.
Do you start radiation this week? My RO was the one who caught my LE and sent me to a therapist?
As for your feet, it doesn't seem likely to me if you didn't have any surgery below the waist unless there is some other cause - but it is certainly measure for concern. Are you keeping your feet raised? Have you cut out salt? Could it be from the Taxol still in your system? I'd call the MO and talk about those symptoms. Or run it past your RO if you're in active treatment every day with that doc.
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Didn't someone mention the Under Armor men's compression t-shirts? I have been looking for them, but I'm not sure what size I should get or if what I'm looking at is the right thing. Has anyone tried these?
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homemom. Yes men's not women's due to cut of sleeve. It's called their men’s heatgear tactical compression tee online. It should have no net like insets,some of theirs do. Just four way stretch. just ask for compression. They are about 30 dollars.
Try two sizes smaller and if your tiny buy the boys size. The tightness of holding you in and compression should be able to help you manage swelling if mild. It takes my pain away often. I'm a bigger gal so I look like a stuffed sausage but wear under my cloths when trunk bothers me. If seams bother you wear it inside out.
Edited. I see they have some on sale in their website but limited sizes.
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Hugs - Thanks! I wear a woman's medium, but I think Men's clothing run larger than women. If I get a small, it might not be tight enough?
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Home. See if you can get into the boys size.
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I HATE LE! That's all I got!
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Ugggghh... It's hard to stay positive but dammit I'm going to! 😎
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81 today. First really warm day since winter started months ago. Yup, LE reared it's ugly head. It's April and I'm struggling with LE already.
I think I need to move to one of the attic regions.
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ohio. Yes hot days take a toll on me too. I just want to rip my sleeve off in frustration as it's so uncomfortable. Have a spray bottle of water ready and spray that sleeve when it's real hot.It really cools it. Just don't keep it damp all day cause that's not good either. Oh BTW I really hate LE. I’ve accepted it but it doesn’t mean I have to love it. Grrrrrr le.
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I really hate LE at the moment. I have been fighting constant nerve pain which gets worse when I swell and while I have sleeves and gaultlets that I wear as needed, the worst of the pain is truncal. I do not have a good chest compression garment. Today I was on a one hour flight up north and have been suffering truncal nerve pain since a couple of hours after we landed, despite wearing my sleeves. This is soooo frustrating and I fly back tomorrow so I'm afraid it will just get worse.
I'm going to have to make this trip every few months to visit my mother who has Alzheimers. What can I do?
Scottie
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I'm new at the LE game. My truncal LE is the worst. What helps me most is the chip bag or swell spot whatever you want to call it and the bellisse bra. I wear them everyday.
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I'm fortunate that my LE has not extended to my arms - only breast & truncal. I wear a Belisse bra whenever I fly - in addition to sleeves & gauntlets. The other 24 hours a day I wear a Wear Ease Sydney compression bra - Style 970. Literally, I only take if off when I shower or to change to a clean one. I even wear one underneath my bathing suit for water aerobics. And yes, I too use chip bags & swell spots.
Others may chime in about compression shirts. Look back to 4/7 to see Hugz comments about Under Armor. Wear Ease has some. There is also a shirt that was created with input from BCO members but I can't recall the name or link just now.
Good luck finding compression that works for you.
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Here is the link for the other shirt. A number of women have raved about it.
http://www.gotravelwear.com/shop/womens-compressio...
And here is the Wear Ease link
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minustwo
Thanks for reposting the shirt link. I ordering one when I get home and will fly with it next time. Hopefully that will help the nerve pain.
Scottie
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MinusTwo- I like my Wear Ease for the day time to. If I am going to be really active (running, walking or zumba) I wear the bellisse. It just keeps the girls from moving at all. My DH put a pool in at our house last summer but due to installation issues it had to be drained 3 times and refilled. The water never got warm enough for me to put my LE self in it. I did one time when the water was barely 70 and my LE blew up! This year I hope to get to enjoy it as much as the grandkids did! I was wondering what to do with the LE boob! When we have guest I can not wear the bra but when it's just us I might steal you idea! Thanks-
Teresa
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Vargadoll - I bought the fushia Sydney bra and found a black bathing suit that just happened to have fushia trim. No one even looks twice!!!
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I love the Sydney bra! I have been looking at it for a month!
Hugz and Minustwo- what is your opinion on popping cords? I am getting some cording in my arm pit again. I wonder of it has anything to do with me not wearing my night garment. My night garment was sent off to be taken up. It' always "rode up" at night and my PT had me refitted.
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Varga - my LEPT massaged away/popped my cords when I first started PT. Luckily I haven't had them return & I don't know the answer. Sorry you're having to deal with this.
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Hugs. Its been 7 years. I still hate LE. I call my LE arm Little Martha. She deserves a name cuz she has life her own and impacts mine way too much!
Oh well. I can still hug family so all is well.
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MinusTwo - my OT said popping them was a bad. PT always popped the ones I couldn't get. I can do pop them or my DH can...I taught him how. The cording hasn't been an issue for months. The only change had been the missing night garment. I wish now I had asked the OT why it wasn't a good idea. I'm a little embarrassed to admit that I'm actually a COTA. I never dreamed I'd be dealing with lymphedema! I probably would have taken some CEUs on LE! My strong area is early intervention and Peds.
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Vargadoll, the concern with "popping" the cords is that some research has shown them to be thrombosed lymph vessels, and popping them might damage them, whereas massaging them gently into submission is less likely to cause damage and will allow them to get back to work without having to heal. The point being that the less damage we do to our lymphatics, the better.
Please don't be embarrassed about what you were never taught--you are hardly alone in having learned little or nothing about LE treatment. It is a specialized field and quite different from other forms of therapy. In fact, in some ways it's even counter-intuitive! Congrats to you on the COTA training you've already had. Now the LE will be of special interest to you, and you'll be a huge help to the OTs you come in contact with, who also learned little or nothing about it. You're in a great position to make a positive difference for all of us!
Hugs,
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Hey all,
I didn't get LE, but I did have this huge seroma (collection of lymph fluid) that developed at the incision site. I had the doctor drain it 3 times and it would instantly fill back up with a horrid smell. Anyway a friend gave me a bottle of her homemade Peri Spray, you can google some recipes or talk to her about it on Facebook (Healthy Nut Natural). So I sprayed the spot and continued to do so everyday and within days it was gone and thankfully has not returned. I don't know if it will help with LE, but it's worth a try.
Cheryl
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Binney - Thank you! I love my field and how we focus on the person and what's important to them. I do not work now but keep my CEUs up. I am an AFL provider. I work 24/7 from home.
Hoping to get my night garment back soon! It's been 4 weeks!
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Below is a link to LE&RN, a site I just discovered. How has my head been so far in the sand? I'll be spending more time exploring this site.
https://lymphaticnetwork.org/news-events/must-read...
"Just a few weeks after this disappointment, a patient entered Dr. Rockson's office. She had had a radical hysterectomy and now had LE in both legs. She had just seen another doctor who said there was no such thing as lymphedema and advised her to walk on her hands with her legs in the air."
And here's a quote from Dr. Rockson's article that JAMA declined to publish because the tone was 'not appropriate'. Scroll to the bottom of the link above to find a link to the entire article.
"Despite the heavy emphasis placed upon the functional importance of the lymphatics in Guyton's
Textbook of Medical Physiology,(3)studied by generations of medical students, the translation of this preclinical curriculum into the practice of medicine is quite faulty. It is disheartening to learn that the average American medical
school graduate receives an exposure to the lymphatic curriculum for less than 30 minutes within a four-year medical education.(4) Small wonder that so many lymphatic patients discover that their health care providers are ill-equipped to provide the care and solace that they seek"edited to add quotes since the formatting didn't work
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